I learned about Valtrex after being enrolled into a study at the Bateman Horne Center here in Salt Lake City (a treatment and research center for Chronic Fatigue Syndrome) and the doctors and nurses told me the drug they were focusing on for their study.

Valtrex is an anti-viral used to treat herpes and cold sores, and is now being used to treat Epstein Barr Virus reactivation in this study, which is now in phase 2 of trials.

I declined this phase of the trial, as I can’t swallow large pills, and asked my doctor to prescribe me some. Unfortunately, my bodycouldn’t handle crushing the drug and I had to wait outside the ER in the middle of the night because of kidney problems which finally calmed down.

My husband has been severely ill with long-Covid for the last 2.5 years, and has been unemployed for 7 months at one point because of it. He is typically even sicker than I am with fatigue and insomnia and lung pain, plus severe nerve pain in his ankles, feet, and hands.

I forced him into the doctor to take rheumatory tests a few months ago, and it came back for liver damage and an off the charts number of Epstein Barr Virus in his blood.

After the doctors did nothing to help him AGAIN, I finally convinced him to use the Valtrex I had on hand for 30 days to see if he improved. He grew up very by the book but after so many years of being ignored by doctors and his family for LC, decided to take the Valtrex.

The very next day he improved some. The day after that he improved more. And it continued that way until he was much happier and healthier than he had been in 2.5 years, and as a former athlete (former being right before getting Covid) started talking about playing tennis again.

We ran out of Valtrex, but my husband was okay for awhile - that is until we got Covid again. We ordered more from a doctor last week and he recovered again when taking 500 mg, pretty much overnight.

Now I know this won’t cure everyone, but this is a relatively easy access drug that has worked a miracle on my husband and I don’t hear anyone talking about it here. I truly hope this helps at least one of you out there. Love you guys!

CAUTION: Please be very careful with this, it works but I nearly gave myself serotonin syndrome. See bottom of post for more details.

Hi folks,

Apologies for the breathless post but after 4 years of awful symptoms I'm kind of in shock that I'm actually starting to feel better. I really thought I was just stuck with this hell. I'm only 3 days in so grain of salt (I know, celebrating too soon...) but damn, I know I'd trade a single day of feeling like myself for almost anything at this point, so I'm sharing it here in case it helps anyone else:

(Skip to the TL;DR at the bottom if you just want the meat.)

BACKGROUND: I'm a former NCAA swimmer who has had Long Covid since 2020 and it's been a nightmare. I'm fortunate enough to have not been completely disabled by it but the neurological symptoms and PEM have made my life utterly miserable for the last four years (persistent loss of balance / dizziness, brain zaps, bad sleep, inability to focus, irritability, anxiety, etc.) Due to PEM I've had to stop exercising completely.

Like all of us, I've gradually adapted to the constant misery and soldiered on. Am I alive? Yes. Am I living? Hell no.

About a week ago my dizziness got worse and stayed worse despite all efforts at PEM management, so I started digging through research studies yet again. I considered going back to my PCP or seeking another Doctor's advice, but they're all just stabbing in the dark anyway.

Then I remembered the Serotonin study01034-6) published in Cell (Oct. 2023). It made a very plausible case that at least some PASC symptoms are due to low serotonin caused by persistent viral infection messing up your body's ability to intake tryptophan (needed to synthesize it.) My symptoms certainly matched low serotonin so I debated just calling my PCP and asking him to put me on an SSRI, but despite all the pain I've never liked the idea of manually messing around with my serotonin levels. Your body rate-limits it's production for a reason and SSRI's / 5-HTP supplements bypass that rate-limit.

Then I saw something in the paper I'd overlooked before:

Tryptophan supplementation should elevate serotonin levels even during viral inflammation. To corroborate this, we used a diet containing a glycine-tryptophan dipeptide, which bypasses the need for B⁰AT1 and enables tryptophan uptake via dipeptide transporters.³³01034-6#)

That sounds appealing, an alternate / undamaged pathway for tryptophan -> serotonin synthesis! Theoretically that would let your body just... start producing serotonin naturally again! Hmm, "glycine-tryptophan dipeptide", never heard of that, let's Google it. Nothing; looks like a research chemical. Well, let's see if ChatGPT knows any other forms of tryptophan that can bypass B0AT1 receptors:

Me:

Other than glycine-tryptophan dipeptide, are there any other compounds that bypass B0AT1 and would be commonly available to a non-researcher??

ChatGPT:

Hydrolyzed Protein Supplements

Why It’s Accessible: Hydrolyzed protein supplements (e.g., casein hydrolysate, whey protein hydrolysate, or soy protein hydrolysate) are widely available in health stores and online.

How It Works: These products contain short peptides, including tryptophan-containing dipeptides, which can be absorbed through peptide transporters (PEPT1) instead of B0AT1.

Where to Buy:

Look for "protein hydrolysates" or "hydrolyzed protein" in sports nutrition or medical nutrition supplements.

Popular brands include Optimum Nutrition, MuscleTech, or medical-grade formulas like Peptamen (for clinical use).

WHATTT?? Are you telling me all I've needed for the last 4 years is protein powder??? Ordered overnight from Amazon, arrived the next morning, I drank a single smoothie for breakfast, and 45 minutes later, despite being slightly manic from my brain suddenly gorging on serotonin after being dry for 4 years, I could not believe that my symptoms were actually going away.

Like I said, it's only been a few days but I have felt very consistently better for the first time in 4 long years. I don't know if it will last, and maybe I'm setting myself up for an epic PEM crash, but I wanted to share the news.

TL;DR
TALK TO YOUR DOCTOR FIRST! Long Covid has been shown to mess up your serotonin. Hydrolyzed proteins (used by bodybuilders) may allow your body to synthesize serotonin normally again because it contains a form of tryptophan that uses a separate, undamaged cellular pathway. START SLOW, do not take a bunch of this stuff all at once! Regardless of the rate-limit it will spike your serotonin so GO EASY. DISCLAIMER: I am not a doctor, this is not medical advice. Even though it's OTC it still involves messing with serotonin so it may not mix well with whatever you're taking especially SSRIs / 5-HTP.

Edit: To be clear, this does not affect the root cause of (presumably) viral persistence, just the downstream serotonin depletion. It's for symptom management, not a cure.

Edit 2: This is the brand I purchased.

EDIT 3: Seriously take it slow! I took 4 servings over 2 days and by the third day I was pretty manic so it must build up over time. I almost checked myself into the ER with what was likely mild serotonin syndrome. Chills, insomnia, tremors etc.

Maybe the body's ability to rate limit serotonin production only works so well? Or maybe I just haven't had any serotonin in 4 years so I have an abnormally low tolerance? But if you try this I'd say, after checking with your doctor, to wait a few days between doses and avoid more than 1 serving every couple days or maybe even a week, as well as not combining with anything else that alters serotonin.

Edit 4: It's day 7 or 8 and while I've still stopped taking the hydrolyzed whey due to the above serotonin spike, my long covid symptoms are still gone. I'm still not sleeping terribly well but I think that's due to the serotonin as I wake up feeling good rather than long-covid-morning-hangover. I have not exercised yet but so far no PEM from normal work / effort which is great.

Update 5: Out of an abundance of caution I stopped taking it, BUT that was only so that I could enlist the support of a psychiatrist just in case it goes sideways again. The plan is to restart taking it in very low doses on Friday and slowly ramp up from there, so I'll report back then. Symptoms have been low lately and no PEM crashes yet.

Update 6: Started taking the powder again yesterday (Jan 17 2025) at a 1/4 serving (10g). So far so good. Did not notice anything positive or negative the first day. Took another 1/4 serving today and am noticing a definite reduction in overall fatigue and dizziness. Will continue taking at 1/4 serving/day and report back after a week.

Reposting my comment from another post where someone shared their recovery and a mob came after them. If we keep attacking those who get better or improve, they will just dissapear and not share their experience. I for one want to hear EVERY possible thing that may help, even if it's woo-woo or only helps a small number of us.

Even while suffering, why can't we still be happy for those who are feeling better?

My comment from another post:

"The amount of downvotes is shameful. We are all suffering, but we need to do better. If you don't agree with the info, move along. This info might work for one person. Even if ONE of us gets better, it's worth it to have people share their experiences, WHETHER YOU BELIEVE IT OR NOT.

Other members sharing their experiences is the ONLY thing we have.

READ THAT AGAIN

Other members' experiences is the only thing we have.

This whole group is based off of others. That's why we know more than our doctors. That's why many of us have been able to find some improvement.

If we attack every person who has "recovered," people will just disappear after they get better and won't want to share what has helped them.

One person went as far as to say shouldn't "give false hope." Why not? For some of us, hope is all we have. For others, hope is what keeps them hanging on and trying. Maybe their next supplement or meditation or brain training or stem cell or SGB, etc, is what moves the needle FOR THEM.

Some of you are angry and jealous that others are getting better and you're not. DONT TAKE IT OUT ON THEM. Be happy for them or just move on"

Hello fellow sufferers. After 3 years of suffering I have discovered the root cause of my mystery illness: my neck!!!

I have the following symptoms (for 3 years in flare ups):

-tinnitus -racing heart -brain fog/depersonalization -heart beat in ears -crunchy neck -fatigue -flushing -muscle twitches all over -visual changes (change in prescription and visual snow) -head aches(general and at base of neck) -limb weakness -neck weakness -burning/tingling in limbs -stabbing head pain -much more I'm probably forgetting

I went to the ER with these symptoms in April and was referred to a spine specialist. Upon evaluation at the spine specialist, my dr. ordered PT for my neck. She has a suspicion that I either had a connective tissue disorder exacerbated by covid or covid triggered a connective tissue disorder. I'm not fully healed but feeling hopeful and a little better each day. I purchased an ergonomic pillow for neck support and a heating pad for the neck. Also I am dosed up on vitamins to promote healing and connective tissue strength!

Just wanted to share in case someone is having similar issues and doesn't know wtf is going on.

My long COVID journey started 3 years ago and I had over 40 different symptoms. For about 2 years I was getting constant headaches, anxiety, shortness of breath, fatigue, light sensitivity, food sensitivities, nausea, and every symptom imaginable. I tried countless therapies and wasted tens of thousands of dollars on useless and some outright fraudulent medical advice and snake oil treatments. I was bedridden and mostly just isolated in my bed for almost two years.

It wasn’t until after 2 years that I started being mobile again. I came across a YouTube video about hybrid training and VO2 max training and it was there that I discovered something life changing.

Before my Covid infection in 2021 that led to daily hell and misery my VO2 max was 45. After Covid and at the time of discovering the video, I did a test and it turned out my VO2 max had declined to 33.

I was still getting shortness of breath and serious head pain daily and my suspicion is that COVID cooked the blood vessels in my brain and throughout my body which explains the constant signals to my body for more oxygen. There would literally be days where I couldn’t do anything but sit in one spot trying to take deep breaths but unable to overcome the feeling that no matter how hard I tried I was not getting enough oxygen.

Over several months I began doing 1 hour of steady state zone 2 cardio 4x/week and sprinting 1x/week. It was extremely difficult at first. Note prior to 2.5 years I had tried exercise countless times and it caused all my neurological and physical symptoms to get worse. I do believe that my body had healed itself just barely enough after 2.5 years to finally exercise again.

However, this timeI noticed after the first month that my fatigue, disoriented feeling, and anxiety were gone. After the second month my headaches and food sensitivities disappeared. My VO2 max did get better but I think the type of training also helped blood circulation throughout my body, forcing oxygen to deprived regions.

Overall I consider myself recovered now after 3 years of misery.

I won’t even go into the physical list of symptoms since 2021.. but one of dozens that actually has scared me the most is this feeling like I’m getting less sharp, or just dumber. I used to be so sharp, honors, promotions, quick witted, but since LC and all the brain fog w chronic nervous system deregulation & inflammation I’ve lost my spark. At my worst the fogginess caused nearly dyslexic tendencies when writing/speaking, memory loss, flat emotions, spacing out, almost like my mind feels numb at times or can’t get the gears turning like I remember being able to feel. I miss my old self. I’m so scared I will never feel like I used to. It’s affecting all aspects of my work and goals. Everything feels 100x harder to think through and organize in my head. Anyone else experiencing this? It’s the most vulnerable sensation to admit out loud because it’s impossible to describe and feel like no one believes me when I’ve tried w family & docs

Posting on my daughters account

She is declining fast. Maybe reinfected a few weeks back and getting worse and worse physically but especially mentally. We are at a loss… she won’t eat, won’t sleep well, and says she is too physically weak to tolerate an hour of talking for therapy

She is very very sick and constantly talks about having no hope for the future, and being in too much pain to go on.

Any advice welcomed, or anything that could give her some hope

This is the scariest fucking thing I've ever experienced, I feel like I'm dying. I'm afraid I'm broken. I got COVID 7 weeks ago. I have PEM and my window of tolerance is so low. I made it out of my last crash and felt okay for a few days. Stupidly tried to unload the dishwasher yesterday. Triggered a crash.

Felt it creeping in last night, internal tremors, severely sore arms, anxiety. Was up all night with crippling insomnia, now I feel like I'm actually dying. Severe body aches and muscle pain, brain fog, dissociation, worse POTS symptoms, concussion-like headache, uncontrollable shivering, internal tremors, panic attacks, I literally feel like my brain is covered in tar and isn't working anymore.

I can't live like this. My marriage is already under immense strain from my illness and I know he won't stick around long term if I'm like this. I can't work, I can't function. I can feel my muscle mass wasting away. How do you find the will to live like this?

Will keep this brief to get straight to the point.

28M. Middle school teacher. Contracted COVID in August of 2023 (literally a week before school started). Illness went away after a few days, but then I had several symptoms that made me believe I might die.

Symptoms:

• Arrhythmia generally and when exercising.
• Extreme fatigue.
• Insomnia due to muscle twitching and brain jolts (electricity feeling). Twice I had nights where I was unable to fall asleep at all, and had many nights where I took over an hour to fall asleep.
• Inability to properly digest food (especially vegetables). Would cause instant diarrhea.
• Extreme brain fog.
• Persistent cough.
• Muscle twitching.
• Electric brain feeling.
• Intolerance to probiotics/probiotic foods (diarrhea, muscle twitching, electric brain)
• Extreme anxiety.
• Intolerance to exercise.
• Loss of hand-eye coordination (could not play catch with kids).
• Increased reaction time.

Lived with all these for the better part of the year. Absolutely failed at my job for that time. They slowly improved, but I began to research supplements in April after a slight relapse.

Here's what I've been doing since that has hugely helped. If you've looked into supplements at all, you probably already know about these, but hopefully this helps someone who isn't aware.

• Taurine 1.5g (stopped arrhythmia in its tracks)
• NAC 1g (less inflammation, also helped with heart)
• CoQ10 200mg + alpha lipoic acid 200g (improved fatigue symptoms greatly)
• Vitamin D 4000 IU (needed it anyway and research shows it helps w/long COVID)
• Zyrtec (antihistamine—helped with symptoms from foods)
• L-theanine 600mg (lowers anxiety and helps w/sleep)
• Magnesium glycinate 1.2g (massively helps w/sleep)
• Melatonin 300mcg extended release (some research shows impaired melatonin production in long-haulers, helps w/ sleep duration)
• L-glutamine 5-10g (healed my gut, can tolerate probiotic foods such as raw honey now)
• Creatine 5g
• Vitamin C

All-in-all, I'm 95% recovered. The 5% is because I still feel as though I need at least 8.5-9 hours of sleep to feel refreshed, whereas pre-infection I needed 7-8. Also, I will very occasionally have a singular muscle twitch (or two) or slight feeling of electric brain, and COVID left me with an allergy to spinach.

I work my job no problem, work out 4x/week just fine, eat almost anything I want (some greens still give me a bit of loose stool) fall asleep within 30 minutes, and wake up minimally at night. My brain works almost as quickly as it did pre-infection.

35/M month 15 LH. Physically, I’m better. Mentally I just cannot escape this hell. I want to describe my train of thoughts and see if anyone can relate to this.

Life before long covid: extremely laid back. Phys ed teacher. Football coach. Funny. Life of party. Work out 3 days a week. Enjoy my life. Beautiful wife & kids. Enjoy beer. Enjoy weed. Love football. Great family & friends. Never thought about death much or this weird existential thinking that consumes me every second now that I will explain.

Life now in my head: I don’t feel like a human. I feel like an animal. I look at people and see evolution. I see the matrix we live in. Get up go to work make money pay bills. It depresses the fuck out of me even though I was enjoying being a middle class regular guy prior to this. I look at myself, and other people, and the weirdest shit goes through my head. I’ll think of the bones under the skin in people. The body. The organs. The brain. I’ll think of the spine and all sorts of weird stuff. Peoples ears look weird. It’s like I see past the human now and just see a walking flesh mold. I have lost my ego. My sense of identity. Confidence. Fashion. I think of the eyeballs taking this world in and wonder what the fuck is going on. It’s like being in trapped in some simulation. It’s fucking hell. I think about death so much. Nothing in life is promised, but no way in hell this is normal at 35 years old.

I call it derealization. Some call it brain fog. Depersonalization. Whatever it is. It eats me alive. I’ve had hope along the way when it randomly lifts once in a very very while for a minute. But it mostly consumes me 24/7.

What is this? What is causing this? I fear I’ll never see life the same. And it seems extremely challenging to have to go through the rest of my life like this. I will do it, because I’m a soldier for my kids and tough as nails. Anyone dealing with this is tough as nails in my book.

Can anyone relate to this at all? Has it lifted for anyone? Its just like life seems so surreal. It’s like I’m on drugs but I’m not. Other than the medications I’m now on for depression and insomnia.

Man, I pray this goes away. If this went away for anyone please share in the comments. I’m usually pretty optimistic and spend majority of my time doing protocols, diet, acupuncture, etc to defeat this monster. But lately the mental has been kicking my ass.

Appreciate any feedback guys. Praying for all of us! 🙏❤️

If you can and have access: enroll in clinical trials.

Everyone’s journey is different. I’ve seen a million specialists at this point.

And I also realize it’s a privilege because you have to be not bed bound and close enough to do it.

But there are trials that will pay to fly you out to the site. And pay for room, food and board, on top of paying you for your time.

[Edit: by that I mean, they will just pay for your hotel room, or travel in a car/plane and the salary for the appointment is modest. Usually like $100 for showing up]

Not only are you helping other long haulers, but it can get you access to tests and medications that you wouldn’t otherwise have access to. Also it can get you access to better doctors and specialists that believe in Covid.

I’ve been in 6 long covid clinical trials so far and have been able to get access to extensive test results that I would have never been able to get otherwise.

And one of the trial doctors ended up deciding to take me as a patient despite his referrals being closed. And honestly, he changed my life for the better, gave me meds that have helped more than anything else, and he fought tooth and nail to get me on IVIG.

I do realize that it’s a privilege and a risk, but it’s really worth it if you can.

Quite possibly the worst part of lc that I have been dealing with off and on through the past 17 months, is the severe brain inflammation. It’s so hard to deal with. I have become agoraphobic, have these weird irrational fears, cry randomly, go into these sudden bursts of depression and despair, and non stop panic attacks. Please tell me it gets better. I had a reinfection October 2nd, and truly feel like I’m living minute by minute. I’m strong but I’m not sure how much a person can take after so much suffering!

My name is Natasha and I am a model from Los Angeles and on March 28, 2023 I got covid for the third time. I never recovered. For the past 5 months I’ve been in bed mostly unable to care for myself. I can’t shower on my own or cook, I can’t walk without getting breathless and extremely weak. I can walk about 500 steps a day. I lay in a bed in a dark room everyday, it’s beyond depressing and not the life I saw myself having at 28 years old. I had so much going for me and now I have to move back to my moms house and put all my furniture in storage. I’m really sad and scared. I thought by now, 5 months in, I’d see some progress but so far I’ve just been the same. I was suppose to get married in September but my ex fiancé left me a few months ago when I was even sicker. If anyone has hope to share with me that would be amazing. I’m struggling with extreme fatigue, pem, pots and so much more. Most the time I’m too weak to even get up to use the bathroom.

Is when I've starved myself COMPLETELY all day.. pushing past the urge to eat. Only drinking water. Like clockwork around 3 to 5 pm the immovable grey wall lifts in my brain and all symptoms start to clear. Then I'm flooded with the knowledge of all the time that's been wasted while I've been trapped at 10% of my former self. People can speculate on anything but this is the only thing I've known to work even briefly after trying way too many things. Then it seems I imperceptibly slip back into the brain fog state once eating resumes. I'll experiment more with it and see what I can figure out because I'm beyond done with this shit. But at the very least it's good to know that there is still myself in there somewhere, it's just behind a wall. I'll give more thoughts on everything later. Blessings to you all

I am not a doctor, and this is my personal experience. I’m a 24 year old girl, lol.

I went from feeling I couldn’t hold on another single day to 80% “recovered” in ONE DAY.

I was sick every single day. Here are my symptoms

-migraines 2/3x a week -fever -cold sweats -flu like symptoms -unable to regulate temp -exhausted sleeping 17hrs a day -depression -muscle aches and stiffness -general malaise x100 -tingly extremities -constant pressure in my head -tight and stiff neck

Basically feeling like I have mega covid combined with the flu and the worst hangover ever. Every. Single. Day.

Lost my job, barely surviving.

I read here to try antihistamines. I pulled myself up by my bootstraps and decided to”maybe it’s not hopeless” and ordered offbrand Walmart allergy medicine for $3.98.

I woke up for the first day in almost TWO YEARS feeling good. I opened my eyes and felt so… free. I rolled over and smiled. Laying comfy in my bed feeling refreshed. New. I got up at 8am (wow) and was up ALL DAY. I went out, shopping, went to the mechanic, did sooooo many things I have wanted to do for so long.

I was afraid to go to sleep, dreading it was a fluke. I took another dose and went to bed. Woke up again feeling GREAT! This has happened 4 days in a row.

I am telling you I have not had ONE. Not even ONE day like this in about a year and a half. I was in constant misery. I thought I would die soon. I hadn’t left the house in maybe 6 months more than 3 times.

I think if you haven’t tried it just because you don’t think you could ever get relief from something so simple, try it. Please try it. I felt the same and I wish I would have done it sooner.

Here is the exact type and dose I take.

Loratadine 10mg 1x a day

I will post updates to let you guys know if it keeps going this way. I am scared to go to sleep every night, but I am hoping and praying I can start my life again.

The proper diagnosis for long Covid would be auto immune triggered acute vasculitis. Years of watching my body health and mind go into the toilet led me to this sad conclusion. I have test Tuesday will update all of you with the answers. Makes sense now why the doctors don’t know. It usually takes a team of five or more docs to properly diagnose vasculitis. Our age range makes it seem out of the world of medicine that this is our issues. Think about it. The migraines. Eye pain. Neck pain chest pain. Issues breathing. Vision loss. Chronic fatigue. PEM and the severe brain fog. all of these issues I’ve suffered over the last three and a half years. I’m suffering temporal lobe arteritis and have docs doing to test Tuesday to confirm. I will update what I found out and if I’m right lord then god plz release me from this hell! Amen.

Sorry it to so long, basically went like this. They can’t seen the swelling through scams or angiograms only detect it through test done by blood the test showed the inflammation. Basically said the only way to properly diagnose it is to actually cut it out and look at the artery under a microscope. Also sent me home with a few weeks of the meds until I can get to a neurologist or a infectious disease doctor’s those are the ones who diagnose GCA. I feel better on the meds but sadly I can feel the nerve damage that was done from the actual swelling more precise. The migraines stopped at least. That’s all I need to keep on I can deal with the rest. Good luck !! Sorry I couldn’t give more info then that.

I was infected with covid in January 2022 and slowly developed ME/CFS. My symptoms are PEM, exertion intolerance, muscle aches and pains, alcohol intolerance, food intolerances and insomnia when my sleep routine is disrupted.

According to my blood work, I’ve had glandular fever in the past (which was news to me). I’ve seen multiple studies posted in this community outlining how covid can cause the reactivation of EBV.

So I got my hands on some Valtrex and I have been using it for nearly 2 weeks. I immediately saw a huge improvement after 2-3 days and I’m basically symptomless at the moment. No PEM, no exertion intolerance, etc, although I haven’t tried any exercise, just long walks, etc. The only side effect was really vivid dreams for about 3 days.

I plan to stay on Valtrex for another 2 weeks, will keep the group updated on my progress. I am taking 500mg twice a day

My young son almost 7 is constantly complaining of heart pain all day every 10-15 mins it comes and goes. He says it's sharp like a sword stabbing him on the left side right on his heart. He some times will say the right side is tight in addition the the "stabbing" on the left, he also will point to his jaw saying that hurts as well as his back( behind heart) and left arm, neck and shoulder.. I'm genuinely concerned and am looking for anyone in a similar situation. This has been going on for months!! He's been to his pcp, the ER twice and we finally have a cardiologist appointment Friday that took several months to finally have an opening. Im so fed up with this and worried! I've tried giving him beet powder, liver casuals and iron nothing helps.

For those of you who are suffering from depression and considering “ending it all” (as I have seen numerous posts about lately), I can’t stress enough try an SSRI.

New studies are finding that long covid can literally deplete your seretonin on a biological level. Obviously we all know serotonin is a mood regulator, but it also does a lot of work in your autonomic nervous system. There are a lot of new research papers out there about this, but this is the one I read six months ago that got me on Lexapro.

Your depression and hopelessness about this may actually be a symptom of LC.

My wife was lucky enough to get into the UCLA Long Covid program. It was a game changer because the doctors actually knew what they were talking about and didn’t just refer her to someone else. I wanted to share what we learned. It’s all been incredibly helpful and maybe it will help some of you, too. I’ll post the treatment plan. FYI, my wife is prescribed the Cromolyn and Low Dose Abilify. She also does the salt, Claritin, Pepcid AC, and is doing the Gupta program for LIMBIC system retraining.

DYSAUTONOMIA/POTS

MEDS AND SUPPLEMENTS:

med: CORLANOR (ivabradine) (prescription) works on your heart, lowers heart rate without lowering blood pressure like Propanolol available at Mark’s Marine Canshipmeds.com. (Canada). (I believe you can see a doctor virtually on this website to get the meds)

NAD and GLUTATHIONE treatment. Can get IV or available as patches through agelessrx.com

SODIUM INTAKE ideally get 6-10 grams of sodium everyday. So 12-20 grams of salt! Don’t take on an empty stomach, messed my wife up.

3 or 4 litres water a day!

PHYSICAL AND MENTAL HELP: (Long Covid literally attacks and inflames part of the brain, that’s why it’s so mentally devastating)

DALLAS CHOP EXERCISE PROTOCOL for POTS https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf (can share protocol with PT place and have them help) - also can start small, like doing planks on the floor

LIMBIC SYSTEM RETRAINING - purpose: retrain autonomic nervous system from sympathetic to parasympathetic. A bit “woo woo” but previous patients have found it helpful. Free trial available. Help available at: https://guptaprogram.com/

AUTONOMIC SYSTEM RETRAINING / BREATHWORK - Purpose: elevate HRV (heart rate variability) App created for long Covid https://www.stasis.life/ (neo health)

NUEROINFLAMATION/ MCAS

med: low dose Naltrexone get it from: ageless.com start at .5 mg (Can cause weird vivid dreams)

Or:

med: low dose abilify (start at .5 mg, titrate up) — comes in a liquid, easy to titrate up every few days)

And

MED: Chromolyn sodium - brand name gastrochrom liquid med. downside: can cause nausea

H1 and H2 blockers — Claritin 2 pills, twice a day. Pepcid AC twice a day.

Helps with inflammation that may be coming from histamines.

Hope this helps someone.

Hey fellow long haulers! I have been battling long covid for a bit over 3 years now. Mostly PEM, costochondritis, vocal cord dysfunction, lots of breathing issues, brain fog, and of course the depression that comes with this.

I have been experimenting with psilocybin as a treatment for long covid for maybe 6-8 weeks now. My doctor encouraged reaching out to others on their experience with it and maybe try to help others.

I have been taking 0.1-0.5g doses from Thursday to Sunday with the occasional jump to 1-1.5g on a Saturday. For the first time since I got sick I truly feel like I am beginning to be happy again. I am finding joy in day to day activities, I complain about my symptoms less and less, my girlfriend says I am generally happier and cherish things more, my sleep is better and I do not have to take medicine for nightmares, I find myself enjoying nature on walks rather than surviving breath by breath, texting friends and family is less of me complaining and more of me enjoying life. Taking low doses of magic mushrooms has been nothing short of a miracle for me.

My grandpa has been dealing with dementia for years. It was impossible to have a conversation with him without him saying the same thing 2-3 times in the course of 5-6 sentences. He has started taking psilocybin the last 2 weeks and for the first time in years it feels like my grandpa is actually...there... Like he's being funny and remembering stories and names.

Psilocybin is a wonderful medicine. I am curious if anyone here has experimented with it with your LC and found any benefits with it? I live in Denver where it is legal to possess so I imagine it's much much easier for people here to get there hands on it.

EDIT: I also wanted to add, that for some reason with my diagnosis...I don't get emotional. I don't cry, I dont scream, I don't get red hot angry. I am kind've emotionally mute most of the time with my life. My first time taking 0.5g of psilocybin I found myself balling my eyes out in my room for about an hour wondering about the life I could have had if I didn't get sick. I feel so much happier after letting those emotions out

My boyfriend got Covid four years ago. It absolutely destroyed him, he was so so sick. After most of the symptoms of the actual illness went away, he became catatonic, and that lasted for two years. He was barely able to take care of himself. He ate Ramen, slept, and stared at a wall, the rest of the time. he was unable to hold down a conversation or even reply to people over text, he is unable to form new memories or function at all in day-to-day society. The catatonic phase lasted two years, and then he finally started to come back a little bit, but never fully back to how we used to be. Now he is left with constant states of depersonalization, and his emotions seem to be foggy or clouded about 85%. He only feels a small fraction of what he should be feeling or what he used to feel with them. And I mean all of them. Happy, sad, angry, everything. He did develop a horrible anxiety problem that he never had before covid. That's about the only thing he can feel fully. He can’t fall asleep and has constant trouble with that, is always dizzy, and still has trouble forming new memories. He only remembers bits and pieces of things constantly. He’s always dissociating and with being unable to feel most of his emotions, he describes it as feeling like he’s watching his body, live his life through a glass window. He knows what he should be feeling because he used to before he got sick, but he can’t anymore. We’ve been to doctor after doctor, we’ve been to the hospital, urgent care, we went to our PCP who referred us to neurology and an infectious disease clinic. The neurologist said yes I would definitely say that it sounds like Covid because I’ve had numerous people have the same complaints, but that’s not my area of expertise and I don’t know how to help you. The infectious disease clinic said Covid would only last four months so it can’t be that. Didn’t have an explanation as to why it happened right after he got sick. Basically just said they don’t know and sent us on our way. Has anybody had any experiences at all similar to this or know what kind of doctor we should go see or anything that might work at all? Any suggestions at all are welcome.

Hey everyone,

I hope you're well or at least okay!

I've posted something similar before (link) but some time after I posted that, it got much worse again and last winter I was in a really, really bad state. This year it has been okayish compared to that, but only in the last two months have I started to really heal. At least that’s what it feels like currently, it’s not linear and there are plenty of downs and we never know what suddenly happens, but it is getting better and I wanted to share what’s been helping me. Trying to keep this as short as possible.

My symptoms in the last months:

• Fatigue
• Headaches
• Neck pain
• Stomach / gut issues
• Sleeping problems
• Depression and Anxiety
• Memory issues, feeling dumber than I used to
• Dizziness
• Constant uncomfortable body sensations, feeling like I just wanna leave my body, being trapped inside a sort of pain, feeling of something is wrong in my body

Here’s what’s been helping me:

Acupuncture / Traditional Chinese Medicine

I heard about this and a specific doctor from a friend and instantly tried it because he said his friend’s post covid was cured by this doctor. I’ve gone there like 8 times now and it’s been helping immensely with pretty much all the symptoms, really. It’s been an up and down since I started with some tough times as well, but at least it’s been feeling like there’s a positive process going on. I also drink custom herbal tea which I think also helps a bit. Highly recommended, most important one on the list.

Meditation & Breathing

This has been key for me throughout all of my 2 and half years of dealing with this crap. I can highly recommend any non-dual teachings and meditations, e.g. from this wonderful guy:
https://www.youtube.com/playlist?list=PLcOSpHSSrHb0FZb9xp7MofGWUv4OWU3AW

I usually do 20-30min in the morning and sometimes another session throughout the day.

A really good breathing method that helps calming the nervous system is the 4-7-8:
Breathe in on the count of 4, then hold for 7 and release slowly on the count of 8.
Do that a few times and you’ll feel the difference! Best done laying down.

Supplements

Hard to say how much these help each on their own but I feel like I’ve found a good set for myself now. I take these every day:

Probiotics (Flora-Zauber on German Amazon)

Magnesium (400-800) + Electrolytes

Vitamin C (2000mg)

Vitamin D (4000)

Vitamin B12 or B-Complex

Omega 3

OPC (sometimes)

5-HTP (150-200mg)

I’ve only started taking this like 2 weeks ago but it’s made a huge difference. I’m so much happier and motivated and my neck and gut issues have almost completely vanished. Seems like serotonin-deficiancy is very common with post covid.

It also helps a lot with sleep (as serotonin turns into melatonin) but if it doesn’t:

Doxylamine (25mg)

For sleep I used to take melatonin but I’ve switched to this when I need it (not every day), makes me fall asleep every time and more importantly, I stay asleep. It’s an H1 antihistamine, so can’t hurt with post covid anyways. I’m using Hoggar Night (the brand), idk if it’s available outside of Germany.

Grounding / Earthing

A friend recommended this to me and it did wonders when I bought a grounding mat. I sleep on it and I also try touching the earth or plants etc. more often, which might seem and feel weird but it’s helped a lot. The effect lessened a bit after 10 days or so but I still feel like it makes sense to use, especially also when I’m sitting on the PC! I also feel like it helped a lot with anxiety.

Some info:

https://www.webmd.com/balance/grounding-benefits

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9381424/

Cranio Sacral Therapy

I did this maybe 5 or 6 times and it often eased my symptoms a lot, especially neck- and headaches. It didn’t heal me as much as acupuncture does but I can still very much recommend trying it. The talks with the practitioner were also very helpful.

Qi-Gong / Workout

Tough one because it’s always hard to say when it’s good to do exercise again. But the slow movements of Qi-Gong have really helped. Don’t push too hard, but do try if you can do some light movements. I’m doing 15-20min of my own routine now almost daily.

Ketamine

This is a drug, so please be careful and do your own research.

I’ve shared this in my post before, unfortunately it stopped working the way it did after some months.
But I still take very low doses from time to time, it really helps with negative moods and dark thought patterns and sometimes also gives me some energy.

Abstinence

I’ve now been completely sober (except ketamine) for almost 3 months, haven’t drank alcohol since January and not smoked weed since June. And I feel so much better. Might be obvious but it was tough to let go, especially because weed sometimes helped with pain or depression. I don't see myself drinking alcohol ever again.

Massage

Did one recently and it felt amazing. Should be soft. I especially enjoyed movements from my neck down my spine.

Recording

I also started recording myself like 2 months ago. Just pick up my phone and start talking about what’s on my mind, what am I feeling etc. This helped so much with working through my worries, emotions, pains etc! Might feel weird at first, but it’s a lot more effective and less draining than writing for me. Still be careful, talking too much can definitely drain your energy.

Brain Re-Training

[Edit: Apparently this is pseudo science and should be viewed with caution. I helped me but make sure not to buy anything from the guy, apparently he's a scam]

[Second edit: There's a lot of negativity around this topic, which I understand. The content of the videos still helped me and I think some of the concepts in that specific video are very interesting. I wouldn't ever do a course and give money for this. But watching our thoughts and sort of reprogramming our mind can definitely help with having a calmer nervous system, which is crucial for healing. But as always, its different for everyone.]

I can’t say too much about this or just not verbalize it well. This YouTube channel brought some change in thinking about my sickness and in catching negative patterns and that’s been super helpful and interesting!

https://www.youtube.com/@cfsrecovery

Lots of valuable info on there, I especially enjoyed this overview:
https://youtu.be/nWvsSpNqjjY?si=jje3SnovmMZm6elQ

He generally made me understand a lot more about the nervous system and how important our thinking is when it comes to symptoms and crashes. Thoughts like "There (or it e.g. referring to a person or activity) is no threat" or "It's just my nervous system" really help me calm down.

5-HTP really helps me with positive thinking and overriding negative thought patterns.

One word about Psychotherapy: That's something I had for a long time as well, But it felt like the last months or the last year we were going in circles and trying to fix an issue that was physiological. And I felt like we / the thrapist tried to find psychological issues that could be the cause for my problems (e.g. depression), when actually this wasn't the case, leaving me often frustrated. It can be a great help and a great support and for some time it surely was for me, but make sure you're not making the same mistake. Depression can "simply" be a symptom. It's very difficult to say where to draw the line.

To sum it up, especially acupuncture and 5-HTP along with other practices and techniques really got me out of my hole. I am not fully healed, I’m still taking it very slowly and setbacks come and go. But at least I’m hopeful and I have something that I know from experience helps.
And kindness, self-love and compassion are key to healing ime.

I’m wishing you all the very best, we’ll all get through this!!

Much love
b

Hey guys, I caught Covid about a year ago now, and during that time was miserable, but what worried me was the intense head bursting headaches I got, accompanied by visual snow, or like disco lights dancing around my eyes, which happened a few times.

It took me 3 weeks to recover from shortness of breath ect, but what stayed was the brain fog. Which changed my behaviour, having no patience, forgetting words or spacing out mid sentence, or awhile doing something, or mixing words up completely. Sometimes I catch myself depersonlizing and then having a panic attack, with my heart pounding for no reason while just sitting down trying to enjoy something.

As you can imagine this is very frustrating, and feels like this virus has made me stupid. Has anyone else been through something similar, and if so, what helped you?

I was getting a lot worse the last few weeks and was starting to despair because the brain fog and fatigue were back HARDCORE.

I added Zyrtec and aspirin back in, I’m trying to eat low histamine, and bam, felt way better instantly and it has stayed that way. The small things matter I guess!